Feeling Better

I think, maybe, knock on virtual wood, I'm starting to get my EPI under control! I'm still having symptoms every day but they are manageable. I've even gained three pounds. Today I was 108 pounds! Part of me hates to see the scale go up, but I know it needs to. I remember having these exact SAME struggles after my Whipple. I think I was just about 100 pounds when I got out of the hospital. Oh yeah, I was HOT! No boobs. No butt. Nothing. Sexy lady!! Even so, watching the scale go up was hard, and it is now.

But what I am reminding myself is every pound means ENERGY and POWER and STRENGTH!

Still struggling a little with appetite, but I do have a small one. So that's cool. I now have to watch NOT to over-stuff myself thinking "Got to gain! Got to gain! Whee! I can eat ALL THE CANDY IN THE WORLD!"

Not that I did that.

Much.

I just finished a delicious bowl of congee, which I love. But to get started was a challenge and I could have just as easily not eaten. I find my food has to really be whiz-bang if I am going to eat it. No mindless eating for me any more, which is a good thing! That doesn't mean I don't. Roy has been bringing home too much candy and I will still put it into my mouth, but I don't really mindlessly eat otherwise.

Today I have to turn in my letter resigning half of my job for the school year next year and I'm dreading it. Part of me feels like "You should suck it up! It's going to cost money and you aren't worth that much as it is!"

But part of me says, "No amount of money is worth the exhaustion you feel 2/3 of the year!"

I feel great the first few weeks, then Fall hits and it's rough up until cold Winter weather sits in and stays cold and clear so February is usually okay. Then in comes March and out like lion and maybe I'm good in May when we get that "Look at what Summer is going to be like..." weather and then rain rain rain. So really, most of the year. Not even 2/3, more like 4/5. I've had a BAD migraine the last three days. Today is only a 6.5 so it's the best day. Yeah. You work with a level 6.5 on the pain scale and that's a good day. (Not NORMALLY a good day, but my baseline is about a 5.)

The congee helps, at least.

Thankful that it isn't this bad every day and that my digestive system is calming at least somewhat.

When Breakfast Feels Like an Endurance Event

This is an interesting impact of my EPI right now and it’s very serious. I am sitting at breakfast at 11:39 staring at my food trying to eat, but I can’t. This week I am down to 105.4 pounds, the lowest I have weighed since probably grade school (not counting when I was recovering from the Whipple). I weighed that weight three times this week, so it’s official. I lost two pounds this week. 

I read my iPad while I’m eating breakfast, it’s one of the joys of my day. I read up on tech, politics, and sometimes catch up on Facebook. I was reading the race report of a 100 mile race from one of my friends. My goal in 2012 was to run a 100 mile race and I still had that goal up until recently. Now even eating has become an endurance event. I know it sounds silly, but it isn’t. It’s serious and sometimes I worry that it’s going to become deadly serious. While 105 pounds it’s “OMG call 911!!!” serious, it is scary when you can’t seem to gain weight or stop losing. It really is. It’s scary when you have NO appetite and you know you need to eat but eating makes you want to cry because even a bowl of cereal looks like a mountain of food.

I used to wonder how anorexia worked. How could you NOT want to eat? Now I get it. I can’t eat. It hurts to eat sometimes. It means I will, almost always (particularly in the morning) get symptoms of stomach cramps, bloating, urge to go to the bathroom (usually on the way to work, stuck in traffic), stomach pain as my body tries to digest my food with the aid of enzymes I have to take with every meal. It’s horrible. I can’t even explain how horrible it is. If you have IBS or have had stomach flu you get it. It’s like having the end of the flu all the time and being afraid to eat because it might come back.

I use medical marijuana to deal with it, to give me an appetite but it doesn’t always work and it’s not always appropriate. I can’t wake and bake every day...imagine driving to work stoned. That doen’t work. Plus, if it doesn’t work, I can’t just take more. Two puffs sometimes works and then I can eat, and won’t be impacted (stoned), but four and I am. I don’t want to be baked all the time. Edibles? Forget it. I don’t WANT to eat, so that won’t work, plus they take time to hit (about 30-60 minutes). Ain’t nobody got time for that!

When I do have natural hunger it’s amazing and odd! I literally want to drop everything and eat! I’m not kidding. It’s like “Everything stop! Tory wants to eat!” Of course I don’t do that because how rude would that be? But it’s such a strange thing. When I do feel hungry I almost want to stuff myself to try to get enough calories in to gain weight. And trust me, I do eat enough calories to gain weight but I don’t because my stupid body isn’t absorbing enough to gain. My doctors do not seem to be concerned with this factoid. I am concerned that they are not concerned and I think I need new doctors, to be honest (except my awesome naturopath who I see Friday). I’m going to ask her if she thinks I should change GI docs or maybe go to an Internist. 

So that’s what I’m dealing with right now. Outcome of this besides weight loss? I’ve had to ask other people if they’ll coach for me with my upcoming running class because sometimes even 3 miles wears me out. I have a half marathon next weekend, and I don’t think I’ll be able to do it. I’m going to start and hopefully I can finish. It’s an out and back so I’ll have to SUPER listen to my body. Yesterday I ran 3 miles and the women’s march and it sent me to bed for the rest of the day. I did have a bad head so that was part of (bad windstorm) but it started with “I need a nap” after the march. I never “need naps”. Why am I the only one who cares that this is happening to my body?